Rheumatoid Arthritis

Hi All,

I took Depomedrol 120 Mg and for 5 days i dint have swelling nor pain but again my knees are swollen and i cant walk as my pain is becoming bad.

My doc asked me to take Methylprednisolone 8mg every day for 3 weeks, i dont know what would happen to me if i take all these medicines.

along with

1:Sulfasalazine - 2mg perday

2:Hydroxychloroquine 400 mg per day

3: Aceclofenac 200 mg per day

I'm only 25 yrs old, by eating all these medicines will there be any side effects.

for past 4 yrs i'm having RA.I checked with couple of other doctors as well but nobody is bothered about the side effects of any of the drugs.

Regards

Prathiba

India

Hi Sherry and All,
I had both knees replaced in 1987 at age 29. At that time they
were suppose to last 7 years, meaning the plastic in them would
be wore out in that time frame. Well, they lasted from 1987 till
2003, yep 16 years, not 7! I had them both re-replaced then and
all they needed to to then was put in new plastic or whatever it is
made of. The prostethics they use today last much, much longer.
Today the surgery is much more improved than it was in the late
80's. Even back then they had me up and walking the same day as
the surgery. Pick a time when you know you will be indoors more,
like wintertime, if you are in an area where there is snow. I did that
with my right ankle fusion and I didn't get to miss being outdoors.
The surgeries greatly improved my pain. You do lose the range
of motion the knee you were born with has but with time I was able
to accept that. With less pain comes acceptance I guess.
If there's anything else you would like to ask me Sherrie, please
let me know. Please do not worry. Stress isn't good for my RA.
(((((((((((((((((((((((((((Sherry))))))))))))))))))))))))))))))))))))
Here's something I posted recently at the RED group about worry.
Anything by Melody Beattie is a great read:
~*~*~*~*~*~*~*~*~*You Are A Miracle*~*~*~*~*~*~*~*~*~
Don't Worry
Worrying doesn't help.
Our worries haven't prevented
one disaster along the way.
At times, the only things they've
prevented is our joy.
Our worries are fear.
We say, I will worry and be fearful until
things have worked out;
only then can I relax and enjoy.
Our worries are self-punishment, a form
of not forgiving ourselves, not loving ourselves,
not trusting.
We may think that worrying helps ward off trouble,
but that's an illusion.
Sometimes worrying brings troubles upon us,
because we're so caught up in our
fear that we don't take the responsible
steps we need to take.
By neglecting our lives due to worry and fear,
we may bring needless consequences upon ourselves.
The lesson is trust.
When we're trusting, we let go of our fear,
confident that what we want and need will come.
We trust that if what comes appears to be trouble
or hardship, we will get what we need to get
through that, too.
When we trust, we get peaceful first,
before we get what we want,
before we see what the future brings.
Worrying and fear are the opposite of love.
Love yourself more than you ever have.
Love yourself enough to stop worrying.
Love yourself enough to give yourself
the gift of peace.
Melody Beattie
~*~*~*~*~*~*~*~*~*Keep It Simple*~*~*~*~*~*~*~*~*~
Best Wishes,
Dodie
Northwest PA

Dear Elizabeth and All,
Yes, it sure helps to have a dream Elizabeth. We begin saving loose
change the minute we get back from a vacation in a large container
and then we don't touch it, ever. You would be surprised the amount
of money one can accumulate in a year this way and the years go by
fast. Keep planning and dreaming. This East Coast weather has been
the pits lately, huh?
We plan on leaving October 1st and would most likely be back
online sometime towards the middle of October. My Dad is not
doing well right now though. We are still planning, but leaving
the outcome on whether we leave or not up to God and "life on
life's terms". Life is what happens when I'm busy making other
plans. Remembering that outcomes are not in my power helps.
Best Wishes,
Dodie
Northwest PA

I am looking forward to a right knee replacement has any one had this
done if so could you give me some info on it I see the surgan on the
11 of August and I am a little worried about it
Sherrie

I have noticed that for a couple of days following my remicaid
infusion I am very tired and ache all over.My strength is nil and I
sleep alot. Anyone else have these same problems after an infusion?
Also anyone taking vicodin for pain, and if so does it help?

Hi Elizabeth and All,
Great articles and sites. Thanks for sending
them Elizabeth!! ((((Elizabeth))))
I have this link bookmarked with a shortcut
on my desktop that I can click on to check the
Aches & Pains Index from Weather.com:
http://www.weather.com/maps/activity/achesandpains/index_large.html
I've definitely noticed more pain/inflammation
with the heat and humidity here in Northwest PA
lately.
I felt WAY better last fall in Southwest NM and
will let you know if I feel better when we get there
in October.
Best Wishes,
Dodie
Northwest PA

Hope everyone finds these helpful!
Love,
Elizabeth
http://preventdisease.com/news/articles/weather_arthritis.shtml

The previous link did not work. Here's the cut and paste version:
APLAR Journal of Rheumatology
Volume 7 Issue 3 Page 204 - November 2004
doi:10.1111/j.1479-8077.2004.00099.x

ORIGINAL ARTICLE
Weather changes and pain in rheumatology patients
Jennifer NG1, David SCOTT1, Ashish TANEJA1, Peter GOW1 and Ashmita
GOSAI2
Abstract
Objective: Many rheumatology patients report exacerbation of joint symptoms
with weather changes. We report the first of a two-part study on the influence
of weather on rheumatological conditions. This survey aims to describe
perceived weather sensitivity in our patient population.
Methods: Two hundred rheumatology patients seen consecutively in a tertiary
hospital were given a 10-item questionnaire (Jamieson). This questionnaire
has been well validated with good test-retest reliability (r = 0.91) and ability
to
distinguish patients with weather sensitivity. New patients and soft tissue
clinic patients were not included.
Results: Seventy-four percent of patients reported weather sensitivity, with
humidity and low temperature reported most frequently as being associated
with worsening of symptoms (66% and 72%, respectively). Seventy percent of
weather sensitive subjects described pain exacerbation prior and/or during
weather changes. Various rheumatological conditions had similar rates of
weather sensitivity, except fibromyalgia which reported 100% weather
sensitivity.
Conclusion: A significant proportion of rheumatology patients report weather
sensitivities. Further studies would be useful to further explore actual versus
perceived effects of weather as this may have behavioural, housing and
medical implications. Our discussion includes a brief summary of current
literature and various postulates why patients may have increased weather
sensitivity.

http://www.blackwell-synergy.com/doi/abs/10.1111/j.1479-
8077.2004.00099.x?cookie

This is a site that shows aches and pains throughout the country! I am gettting
the Heck out of Jersey, lol! (Hope this link works!)
Elizabeth
http://arthritis.about.com/gi/dynamic/offsite.htm?site=http://www.intellicast.co\
m/
Local/USNationalStd.asp%3Floc=usa%26seg=Health%26prodgrp=
Comfort%26product=AchesPains%26prodnav=none%26pid=none

Hi All,
This is some of the research I was telling you about yesterday. This article is
small enough to cut and paste:
Elizabeth
1: J Rheumatol. 2004 Jul;31(7):1327-34. Related Articles, Links

Weather effects in rheumatoid arthritis: from controversy to consensus. A
review.
Patberg WR, Rasker JJ.
Department of Medical Physiology, University of Groningen, PO Box 196,
9700 AD Groningen, The Netherlands. w.r.patberg@...
OBJECTIVE: To review and evaluate the evidence for the widespread view
that signs and symptoms of rheumatoid arthritis (RA) are influenced, or even
caused, by the weather.
METHODS: A literature search from 1985 to April 2003 was performed using
the PubMed database of the US National Library of Medicine. Additional
relevant articles were identified from the bibliographies, and from our own
archives. Methods and findings of the studies were critically reviewed.
RESULTS: Only temperature and humidity appear to have clear influences on
the symptoms of RA, although the reported findings do not agree. In many
cases, the apparent controversies can be explained by the intimate
relationship between temperature and humidity, and by taking local
circumstances into account. The differences in the methods applied in studies
on effects of weather on RA strongly hampered our evaluation.
CONCLUSION: RA variables are positively correlated with the humidity of the
microclimate at the patient's skin. High outdoor relative humidity is
unfavorable, but has less influence when there are few barriers for water
vapor, like clothes, and when air conditioning is used. High temperature is
unfavorable since it increases absolute humidity, but beneficial as well, since
it reduces the presence of barriers, and stimulates the use of air conditioning.
The classic opinion, "Cold and wet is bad, warm and dry is good for RA
patients," seems to be true only as far as humidity is concerned.
Publication Types:
* Review
* Review, Tutorial
PMID: 15229951 [PubMed - indexed for MEDLINE]

Hello Elizabeth,
That is the nature of RA, bad flare ups. I'm sorry to hear you are not on a
regiment that keeps the RA at a more even level. What are you taking for
the RA?
When my husband was much younger he would experience flare ups that would
cause him to run a low grade fever and have bad chills, like a sever case of
flu. Since he is on Meth. he does not experience that level of flare.
I hope your doctor can do more to keep you comfortable.
Vera/FL
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I don't know if it is from the very high humidity or what, but all I know is I
was
fine on Thursday and on Friday my RA in my arms hit very badly. Luckily, the
worst of it started when I got home from work. The pain was so bad, every
time it peaked all I could do was cry and scream. I really freaked my poor
husband out!
It was the first time ever that I considered going to the emergency room for the
pain. I took a Percoset, a "10 one" and a sedative and had to wait for it to
kick
in. I wish I had something stronger and more immediate at home because
why should I have to suffer waiting for it to work? Now its 4 a.m. and I feel
the
pain again, I just took half a pill. I shouldn't even be writing this but it
helps to
get it out.
To make matters worse, Brad and I are supposed to go to a wedding today
and there is just no way! I feel really bad cancelling at the last minute like
this.
Thanks for reading,
Elizabeth

Hi Sherrie,
I've tried lots of creams on my face for dry skin (under my eyes and my
temples) some of them pretty expensive and finally decided I liked 'Pond's
Nourishing Moisturizing Cream'. That is what the last jar was called, you
know how these companies are always changing the names of things. It comes
in a couple different size white jars with a blue lid at Super Wal-Mart. In
the section with other face creams. I always apply this before putting on
my makeup.
'Aquaphor ointment for severely dry skin treatment', is very good but more
expensive. Great for the legs, chapped or cracked lips. Comes in a tube or
jar with a dark blue lid at Wal-Mart. The skin was very 'tender' in my tail
bone area after riding for several days in an RV. We stopped at a drug
store and asked what to put on my skin and that is what the druggist
suggested. I got immediate relief. My husband uses it also.
Cheers,
Vera 71/Florida
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Nina has sent you a story: "nbc5i.com - HealthWatch - Review Turns Up
Contradictory Medical Research Results"
the link:
http://www.nbc5i.com/health/4718160/detail.html

http://www.usnews.com/usnews/health/articles/050627/27arthritis.htm

Hi All.....I have to go for a Range of Motion physical Monday.....have
any of you done that......
What do they do ....does it hurt? LOL
THANKS !!
Carla :)

Hi it's me boogers,as in you idiot bees don't have
boogers. June 3rd I stabbed myself with a dartlike
motion, as instructed, which is easier than..
Anyway $1,433.09 cents later, Humira seems to work. I
jumped through all the hoops, xray, labs, insanity,
and am about half-way through the peak months. My body
is like a pesistant pretzel hey..that's a name what
was I thinking (you idiot). I have never been on
prednisone, methotrexate let alone something that
costs $715. a dose. Seven-hundred dollar pee that's
enough to make me deeeepressed.
36hrs into the first dose I got heavy books on my legs
to see if I could lay flat, very painful, but when the
back of my legs felt some of the mattress I knew that
pretzeldom could be diverted for a while. My knees
still won't flatten yet, and I can't get around yet
but bygummy if you're on the edge of not coming back,
don't delay like I did. Stab the one who hurt you, go
to prison and receieve the treatment you need. Joking
ok!
Bought an $8.00 lawn chaise, put it ON the Bed and
layed at a slant. HARD work but a hoot for eight
bucks.
Jack-LaLane rope woven in-the-toes pretend bike ride
on the bed. There's more but later...Nan..ebay mom WAS
a HOOT Thankyou. Everyone Type that in google.now.
Also hope others saw June 27th US NEWS and World
report on Arthritis. The mom who wouldn't walk to the
back of the store to buy milk...

I have RA and an herniated disc at the moment and I need to purchase a
new mattress. Has anyone used the Select Comfort sleep number bed?
Any advice on mattresses would be great? Thanks.

hass any one experinced dry skin due to the meds they are taken if so
what did you do for it I have some dry skin on my face and can't get
it to clear up
Sherrie

We would like to remind you of this upcoming event.
Barbara's Birthday
Date: Tuesday, July 12, 2005
Time: All Day

Happy Belated Birthday Barbara,

I hope you had a wonderful day,

Joy

[INLINE]

I have a question for the group: does anyone here feel slowed down by
hot weather even if you do not leave your comfortably air conditioned
home?
Also, is anyone bothered by wind, even if indoors?
Thanks in advance for your answers.
Sierra

Hello everyone, my name is Sue. I have been a member here for a while
but have not felt the need to post much until now. I have been
diagnosed with Ra for almost 30 yrs and I have not encountered this
problem before. I have read that fevers are not uncommon with people
who have Ra. I have not ever encountered this before, other then when
I was what I call legitimately sick. Now over the past three weeks I
have been running a low grade fever. It is not a constant thing. On
again, off again. It has run anywhere between 99.3-100.6. I take
Tylenol for it and drink lots of water, but I am wondering if this is
something to be concerned about. Until last night there hasn't been
any other symptoms that went along with this, just the fever. Last
nite I had some nausea too. I can't afford to go to a Rheumatologist
right now. At $30 for just an office visit, it is more then I can
afford right now and we moved to Tx last yr so I have to find a new
Rheumay anyway. I was wondering if any of you have had this problem,
is it something to be concerned about and what do you do about yours.
This is getting real old real fast.
Sue

Hi I am new to the group.

I look forward to getting to know you all.

I have osteoarthritis. I have good days and bad days,

but they are more good days since I am no longer working.

I am from Ohio and am 60. I like to read, cross-stitch and quilt,

love the outdoors, camping and fishing.

I also visit my mother in the nursing home, she has crippling

arthritis and fibromyalgia and is in constand pain, has been for

years. They have her on oxycontin 2 times a day and 1-2 percosets

every 4 hours as needed. I visit her each day, she is ok in her mind,

just her poor body is worn out . I look forward to being a part of

the group and reading all the posts.

Joy

Hi All,
As recommended to me by my mother-in-law, who is really into this, I am
thinking about taking Celadrin, Emu Oil and MSM for inflammation and joint
support, and Primal Defense for digestion. Does anybody have experience
with these? I am not sure if I can take these with the Humira I take for my RA
because it warns about certain herbs but of course doesn't say which ones! It
may be somethings I end up taking when and if I try to conceive a child
because I would want to be off all meds then.
I called the Humira medical info line but they couldn't tell me anything
because they had never done clinical studies that included supplements. We
determined that it was my mail-order pharmacy that put the warning sticker on
the box
Thanks,
Elizabeth

I have a new kitten. She is about four months old, and VERY active. She took a
liking for my new LazyBoy recliners to sharpen her claws on, and since I don't
like to declaw my cats, I was looking for something she would prefer to the new
chairs. I bought one of those foam swim tubes (4 feet long, three inches in
diameter...$1.44.) I cut it into four short lengths abut 15" long and slit them
up one side and put them around table legs, chair legs, etc. She LOVES them.
No more clawing furniture. There is something irresistable about the texture of
the foam that she prefers to all other surfaces for claw sharpening. If you
have a house cat, this is the cheapest, most effective scratching post I have
ever had. Beats those carpet posts by a mile.
Sharon

Well G'Day everyone..I see alot of new people on board here.Its'
been a long time since I posted here. My RA is spreading like the
fires we had here last month.But the Enbrel seems to be starting to
work.There is a new developement..Did an MRI on my lumbar spine and it
is now deteriating.Can walk maybe a few yards and thats it.But I will
continue to walk until I crawl. I read all the recent entries..Alot
going on with Knee replacements.Haven't had to do that yet.But I know
some one who has gone through it and it has changed their life for the
better.....I am limiting my walks to inside these days..It has been in
the 100's for the past month or so.Love Arizona. Really do.The fall
and winters are fabulous.Low humidity. The best move I ever made. I
have fibro also and it hasn't been bothering me much at all...til next
time..........................Skye

Hi all,
I mainly lurk and read, but have a question. I am 53 was diagnosed
with RA in 5/04, but have certainly had it for 2-3 years prior to
that. I am in the TEAR study through my Rheumy and my RA is somewhat
controlled but not great.
My question is has anyone had their RA go into remission and if for how
long? Does RA ever stay in remission? Have any of the women who had
it go into remission have this happen around menopause?
Thanks for any responses,
Karen

Interesting that you all are talking about this......I have to have one in my Neck..(@@)...nervous about that......into the joints......Yikes.....

What does anyone know about Cervical Spondlyosis??? I have bulges at C5-6 and C6-7 and that is what the Neurosurgeon calls it. (@@)...also go for PT for 2 weeks.

THANKS !!!
Carla :)
--
.-.. .-..
( o )_( o )
__ / '-' '-' \ __
/ / " \ \
| \ \___/ / |
\ \`-. ____ .-' / /
- ' /\ /\ '-.
( (_// (_ _) \\_) )
frogge :)

Mary Rue has sent you a Care2 e-card!
To view your card, simply click on this address:
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Sending Care2 e-cards helps the planet!
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It will be available online for 14 days.
Over 2 million members strong!

BOXER DOGS ARE BEAUTIFUL maryrue@...
Web Pages:
http://www.geocities.com/bmtboxers/
http://www.angelfire.com/ms/beamartonsboxers

Disturbing news. Guess what is not on the formulary for those forced
to use Medicare Part D. Barbituates and Benzodiazepines. This means
that most of the anti depressant or fibromyalgia meds we take will NOT
be covered. We will be forced to pay for them retail and since
CANADA'S door is now closed to us, you can see this is a big drug
lobby initiative thats been passed through. I am on disability and
recieve about 8800.00 a year. This means I cant afford retail
prescriptions. I take trazadone, Soma and Ativan, all generic. I
thought everyone should know so they can start making plans. Just
type into www.google.com and type in "Medicare Part D formulary
Exceptions." I was denied my refill for Soma today. The cascade of
denials will be coming soon I suspect. Like living with RA isnt hard
enough. Well so much for my Happy Independence Day. Hugs, Deborah

Hello. My name is Laurie and I am 36 years old. I live in Southern
California. This is the first time I have posted a message. The
doctors think I have a herniated disc and I am in alot of pain. I
cannot stand for more than 5 minutes without being in severe pain. I
was on steroids for 11 days and it seemed to help some. Since the
stopping of the steroids, I have declined and the pain has gotten
worse. I am so depressed because I can't go anywhere or do anything.
I am waiting for an MRI. I also have Rheumatoid Arthritis and have
been dealing with that, the last couple of years.

Hi,
Today is "Invite a friend day" on the
www.ButYouDontLookSick.com message boards, and I wanted
to invite you!
I am a member there, and have found some great
conversations, friendly people and more. Come join me if
you get a chance, and when you make your first post- say
who referred you :)
Hope you can come!
http://www.butyoudontlooksick.com/boards/
Elizabeth

Hi Deborah,
Thank you very much for the information. Paul was given an epidural
injection on Wed. and it has helped some. They are doing the other things
but it take so long to get answers!!
He has OA in addition to RA .
Thanks again,
Vera
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Does anyone here experience this? I have pain in my hips, buttocks, the tops
of my thighs and groin area. I do not think I have bursitis as my Rheumy as
suggested because it is bilateral with too many areas involved. I am planning
on researching this too but would like to hear from others as to thoughts and
treatments.
Thanks,
Elizabeth

First congratualtions Stephanie, not only on the engagement but the size 12 as
well!!!
I am in the process of tapering too... currently at 6, things have mellowed out
a bit. 8 to 7
was a total nightmare, 7 to 6 a bit better. I go to 5 on Sunday and am a bit
nervous about it
but will hold a good thought. Is there any benefit to staying on a low dose for
a long period?
Does the drug still do anything?
I gained 30 pounds while going up as high as 15. I really hope going down will
help because
the old "watch what you eat" and "exercise more" sure doesn't seem to be working
as well as
in the past...
Be well everyone,
Sam

Hi everyone...
I just started a new group... here we can post suggestions & ask
questions about making everyday life easier for us... Housekeeping,
gardening, childcare, etc... Anything that can help us out!!
Please join and give us your ideas!!!
Thanks much!!

Hi Prathba,

Welcome to the group. This is Steph in Virginia in the US. Some of the meds I take may not be available in India. I'm 27 and have had arthritis for almost 6 years. My meds are: Azulfidine EN (the brand name for Sulfasazine), Ibuprofen, Methotrexate, Folic Acid, Flexerall, Prednisone & Remicade.
I was in a car accident almost a month ago and used ice for the injuries I sustained. Otherwise, my arthritis symptoms are relieved more with heat. My favorite is Thermacare Heat Wraps. They are sold in drug stores here. They are wraps for shoulder, lower back, neck, wrist and knee. They work really well when I have acute symptoms.

Take care,

Stephanie

Hey all,

This is Steph in VA. I have RA (originally dx'd with Reactive Arthritis and AS but my rheumy of the past 5 years changed it to JRA with adult persistence b/c he found that I had symptoms throughout my childhood.

Anyway, I have had arthritis for almost 6 years. Symptoms started when I was 22 and I'm about to turn 28. Fortunately for me I only have arthritis -so far.

Speaking of auto immune clusters: my dad has severe psoriasis and diabetes and my mom carries the gene for RA but has osteo. On my mom's side I have the following diseases: asthma (4 people), RA (4), MS (1), psoriatic JRA (1), Raynaud's (1), Bell's Palsy (1), cerebral palsy (1), sleep apnea (1), diabetes (6), epilepsy (1), Tourette's (1), heart problems (4).

On my dad's side, every man has heart problems & all of the women in my dad's generation and before died of cancer (breast, lung, colon, & bone)

I'm actually in a genetic study based out of North Shore University Hospital in NY. When the doctor overseeing the project heard of all the auto immune illnesses in my extended family he asked if he could do a cluster study for a family study he is doing. Most of my family agreed to participate.

Take care,

Steph in VA

has any one had a knee go bone on bone and if so what did they do
untill you got in to see the doctor they told me to keep ice on it
three times a day that helps some but not alot any ideas would be nice
as I am in a lot of pain and don't get to see the doctor until August
that is the earliest I could get in then I have to wait for surgury it
is going to be a long hot summer to be in pain thanks for any help
Sherrie

I've had bursitis in one of my shoulders numerous times and nothing would
clear it up but a shot. I didn't mind getting them. It was worth any
discomfort to have it clear up. Ask your doctor to numb the area before he
gives you the shot if you are concerned.
Vera/Florida
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hi, all! just received a NEW diagnosis of psoriasis = also have RA,
OA, and fibro w/restless legs syndrome = does anyone else have
psoriasis? gentle hugs all around, Marcia in western N
Note: forwarded message attached.

Good morning! Have any of you had the nasty experience of having a pinched
nerve in the spine area?? If so, what was your treatment and what helped the
most??
Paul has RA and a month ago he has his first infusion of Remicade. Two days
later he was in great pain and a numb spot on his leg. We thought for
awhile it was a side effect from the Remicade but since it has gone on for
so long that is no longer the thinking. X-rays were no help. He had an MRI
yesterday and is scheduled for a shot at the base of the spine later today.
In the mean time they keep giving him pain pills.
We are frustrated!
Vera & Paul/Fla.
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Hello one and all...
I just returned home from a whirlwind 6 day road trip... with four kids under 6,
my mom
and my sister from DC. It was awesome to return home and see my email full of
everyone
sharing so much info back and forth and supporting one another. I thought I
would chime
in with my two cents worth on various topics....
Vacations: Interesting note, I was able to walk the streets of San Francisco,
shop til I
dropped, care for three little ones, walk on the beach... then I came home. I
just melted,
got in the door and laid on my bed for two days! Do you think being away from
the daily
stress has that much impact on this crazy disease? Is it that difficult for me
to be the mom
& the wife? Laundry, dishes, picking up toys, keeping kids engaged, this is my
life. I
thought when I went away I just took it all with me but I think I was wrong. I
was relaxed
and in less pain than while at home... perhaps what I needed was more of a
"mental
vacation"...
Methotrexate: Naive me! I thought everyone was on ten pills a week. It seems
like all my
meds have "may cause drowsiness/dizziness/etc..." on them so I am never able to
figure
out what comes from where...I have tried the shots, nothing really different so
Doc says I
can go back to the pills. The only side effect I have experienced has been hair
loss,
thankfully the Lord gave me thick hair and it's really only me who can tell so
far.
Buzzing Ears: This just started since I got home from the road trip... anyone
else buzzing?
Cleaning House: Okay after seeing the Packrat Palace, I feel MUCH better! Anyone
else
have little guys? Have any words of wisdom in keeping "stuff" contained? My
little girl
leaves a trail behind her like you would not believe, I keep working on getting
her to pick
up after herself... it's a slow process. We live in a very small house so I am
forced to
continually purge especially after the boys birthday and Christmas... twins=
twice the
stuff!
Pulling Weeds: Two words; Round Up
Elizabeth: What's the aversion to cortisone shots? I have not gotten them but
have heard
lots of people get them... is there something I don't know about them? Sorry to
hear about
your hips, ouch! I'm sending thoughts of pain relief :0)
Take Care everyone,
Sam

Well I have gone back and forth with Bursitis and Fibro as to the problem in
both of my hips. Its been acting up a little and I have been having a bit more
difficulty even sleeping in the Sleep Number Bed on almost the lowest setting.
I had a Rheumy appointment today and he examined me and said I had
"classic" Trochanteric Bursitis, which is just a fancy name for bursitis in the
hips!
For so long I was thinking it was Fibro, last year at this time the pain had me
in a wheelchair. I asked him what I could do and he said the only thing is a
shot of cortisone and novacaine. I declined!
I just don't know, I have it in both hips, I'm just not sure if this is the
right
diagnosis.
Any thoughts on the diagnosis or suggestions on other things that may relieve
the pain? I have read that people with arthrits sometimes develop bursitis.
Thanks,
Elizabeth

Hi Deborah and All,
From: dbargad@...
This site is great: http://www.flylady.net/
Best Wishes To All,
Dodie
Northwest PA

Thought this was cute

Some new ideas every day!

Always keep several get well cards on the mantle..... so if unexpected guests arrive, they will think you've been sick and unable to clean.

BOXER DOGS ARE BEAUTIFUL maryrue@...
Web Pages:
http://www.geocities.com/bmtboxers/
http://www.angelfire.com/ms/beamartonsboxers

You gals have the right idea. We just moved into a new house and we are
trying to keep it easy to care for as we are both past 70. All the windows
have vertical blinds and no drapes. They don't catch the dust like the mini
blinds will. Not a lot of do-dads setting around and not a lot of
decorations on the walls. One picture of each grandchild and that's it.
We live in a mobile home park in Florida and our lots are small. We will
have grass, a sprinkler system and someone to cut the grass but no trees or
bushes. I've done my share of yard work! We never open up the house
because we have allergies and we like to keep the dust out. If it gets too
warm we turn on the A/C and if it gets cold we turn on the heat. Love it!!!
Vera
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Nina has sent you a story: "nbc5i.com - HealthWatch - Some Anxiety Drugs Not
Covered By New Medicare Benefit"
the link:
http://www.nbc5i.com/health/4655018/detail.html

A Prayer for the Lonely and Depressed

God bless all who are battling those inner demons of depression, loneliness, unworthiness, and hopelessness. Shine Your warm Heavenly Light down upon all of us, Lord, who are looking for our soul mates. Guide us to find peace, happiness, and contentment in our lives and within ourselves.
Amen.

- Beliefnet member shellim26

Have a great day,

Lynette & Molly (the fruit stealing Boston Terrier)

Maryland

Zone 7 http://community.webshots.com/user/lmthib

Paul had to go from the MTX pills to the injections because the pills
stopped working.
Vera Central Fla.
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I was diagnosed with RA & PA about a year ago. I am on Remicade
infusions & Arava. The pain is unbelievable some days...like today.
I am 44, married and have a 12 year old son. My question for
everyone
is: How do you get your spouse to understand some of what you are
going through on a daily basis? He treats me like I am a cripple. I
am in tears as I write this. He doesn't understand the disease aat
all and has never read any of the information that I have given to
him. He tells what I can & can't do....no 4-wheeling with him & the
group because.."you'll get beat around". No bike riding...no
exercising. He refused to go to the city today...WHY?? His
excuse: "You can't walk any way". He says things like that all time.
I have to sneak to do things. When I am in a lot of pain I hear the
same old line...."you're alway's sick and in pain". I still can do a
lot of things and I know my limits (most times :)! I work 30 to 40
hours a week and I am on my feet during the entire shift. I feel
really depressed right now and keep fighting the tears back. I feel
really angry at my disease and my husband. Being protective is one
thing but I feel like my life is being taken away not only from the
disease but my husband. So I am hoping I can find people on here
that
I can talk to becausse it's really difficult to have no one.

Hi Cynthia,
You had asked how the heat in Fla. effects Paul's RA. He says he feels
better in general in the heat... his muscles seem more relaxed. If he is in
cold temperatures and gets chilled, he is miserable and hurts more. He
never wants to live in a cold climate again.
Vera/Central Fla. where it was about 89 degrees today.
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Hi Nina,
Most of the people that take the metho injection do so b/c they get nausea from the pills.
Steph in VA

This is why he won't give me Remicade.
http://www.lamblawoffice.com/Remicade-hepatotoxicity.htm
Johnson & Johnson's Centocor updated the Remicade label in December 2004 to
include warnings for risk of pneumonia and hepatotoxicity associated with
Remicade. Hepatic reactions include: acute liver failure, jaundice,
autoimmune hepatitis, and cholestasis. In a December 2004 Dear Doctor
Letter, Centocor advised healthcare professionals that in postmarketing
experience worldwide, severe hapatic reactions including acute liver
failure, jaundice/cholestatis, and hepatitis, including autoimmune hepatitis
have been reported in patients receiving Remicade, and a new warning was
added to the label.

New to group and recently diagnosed. After initial visits to two
different rheumatologists, seems the "front-line thing to do" is
begin taking methotrexate which I'm starting this weekend.
I'd appreciate hearing from anyone who began this way--how it
felt--I'm scared of course. I've never been big on the medical
establishment way of throwing pharmaceuticals at you until
something sticks-let alone listening to patients who like to do
some research on their own:)
I'm also interested in the diet/nutritional aspects of dealing with
RA-since they have no idea what causes RA or how to cure
it-can't hurt, eh? (so to speak).
So--is it just all downhill from here, adding med after med until
you're taking everything under the sun? Or trying one after
another?
Blessings to all, and thanks for responses.
Wen

Is your RA becomming a pain - literally? Has rheumatoid arthritis
taken control of your life? If so, self-management of RA could give
you your life back. Based on research by the Missouri Arthritis
Rehabilitation Research and Training Center at the University of
Missouri-Columbia, this research evaluation of a new online version of
a proven self-management program seeks to empower people with RA via
the Internet. Pain and stress reduction, interpersonal
relationships,and fatigue are just a few of the important issues that
RAHelp.org will address in this activity. Arthritis health
professionals provide instruction and personalized one-on-one support
in addition to the online discussions with other people who have
arthritis. Log onto http://rahelp.org to discover how you can put your
life back into your own hands and contribute to an important research
project that could enhance the future treatment of arthritis.

I just checked. They don't have one.
Nina

Well, I finally talked to someone at Enbrel. Obviously this is not
something I'm going to be able to try through Medicare.
At benefit level I, the deductible is $3600 per year. You pay that first,
then it's $250 per prescription plus 25% of the actual cost of the drug.
They said they couldn't tell me until July 1 when my approval goes into
effect how much that would be. I told him I had heard that it's $6000 per
month and he said it isn't quite that much.
I don't know why they come up with drugs that no one can afford!
Nina

I saw this on another list today and thought you might be interested.
Nina
Ask the Experts about Insomnia
From Medscape Primary Care
The Impact of Disturbed Sleep on Pain
Question
What is the impact of disturbed sleep on pain?
Response from Thomas Roth, PhD
Professor, Department of Psychiatry, Wayne State University College of
Medicine, Detroit; Director, Sleep Disorders Center, Henry Ford Hospital,
Detroit.
A variety of sleep disturbances, including difficulty falling asleep and
frequent nocturnal awakenings, are commonly reported by patients
experiencing pain. Even among pain patients not reporting frequent
awakening, reports of nonrefreshing sleep are common. Sleep laboratory-based
studies in patients with acute pain (eg, postoperative patients), as well as
in patients with chronic pain (eg, neuropathic pain and rheumatologic
conditions), show frequent arousals, difficulty falling back to sleep after
nocturnal awakenings, and a reduced time spent in REM sleep.[1]
Clearly, pain causes sleep disturbances. However, it is becoming
increasingly clear that these sleep disturbances result in an increased
sensitivity to pain, thereby setting up a cycle of pain leading to disturbed
sleep which, in turn, leads to more pain.[2] Both the loss of REM sleep,
even for 1 night, and partial sleep deprivation can lead to increased pain
sensitivity.[3-5] A loss of sleep as small as 4 hours over 1 night results
in a significant decrease in pain threshold.[6] Although 4 hours of sleep
loss for a night may seem extreme, it is important to remember that the
consequences of sleep loss accumulate across nights. Thus, 1-2 hours of
sleep loss across 2-4 nights would have the same effect. Furthermore, it may
not simply be disturbed sleep that exacerbates pain. The administration of
opiates to alleviate pain may turn out to be counterproductive, as these
medications are REM suppressants, and loss of REM sleep increases pain
sensitivity, as noted earlier. Thus, t!
he preservation of sleep time and sleep architecture are important parts of
pain management. Interventions such as maximizing the sleep environment in
postoperative and other hospital patients as well as the use of behavioral
and pharmacologic treatment to manage insomnia in chronic pain patients are
important aids in the management of pain. Finally, insomnia clinical trials
in comorbid pain conditions should measure treatment efficacy, not only in
terms of sleep, but also in terms of pain control and the need for
analgesics.
References
Menefee LA, Cohen M, Anderson WR, Doghramji K, Frank ED, Lee H. Sleep
disturbance and nonmalignant pain: a comprehensive review of the literature.
Pain Med. 2000;1:156-172. Abstract
Affleck G, Urrows S, Tennen H, Higgins P, Abeles M. Sequential daily
relations of sleep, pain intensity, and attention to pain among women with
fibromyalgia. Pain. 1996;68:363-368. Abstract
Moldofsky H, Scarisbrick P. Induction of neurasthenic musculoskeletal pain
syndrome by selective sleep stage deprivation. Psychosom Med. 1976;38:35-44.
Abstract
Moldofsky H, Scarisbrick P, England R, Smythe H. Musculoskeletal symptoms
and non-REM sleep disturbance in patients with "fibrositis syndrome" and
healthy subjects. Psychosom Med. 1975;37:341-351. Abstract
Lentz MJ, Landis CA, Rothermel J, Shaver JL. Effects of selective slow wave
sleep disruption on musculoskeletal pain and fatigue in middle aged women. J
Rheumatol. 1999;26:1586-1592. Abstract
Roehrs TA, Blaisdell B, Greenwald MK, Roth T. Pain threshold and sleep loss.
Sleep. 2003;26(suppl):A196.
Funding Information
Supported through an educational grant from Sanofi-Synthelabo Inc., a member
of the sanofi-aventis Group.
Disclosure: Thomas Roth, PhD, has disclosed that he has received grants from
Aventis, Cephalon, GlaxoSmithKline, Neurocrine, Pfizer, Sanofi, Sepracor,
Somaxon, Syrex, and Takeda. Dr. Roth has also disclosed that he has served
as a consultant for AstraZeneca, Aventis, Cephalon, Cypress, Eli Lilly,
GlaxoSmithKline, Hypnion, King, Lundbeck, McNeil, Merck, Neurocrine,
Organon, Orginer, Pfizer, Roche, Sanofi, Sepracor, Somaxon, Syrex, Takeda,
Transoral, Vivometrics, and Wyeth, and as a speaker for Sanofi.

Hi everyone
I had an appointment with my rheumatologist today. He seems to think I'm at an impasse with MTX and prednisone. He's upped the MTX to 8/ 2.5 mg pills a week and has taken the prednisone down to 5mgs a week. I've gotten the feeling he's not a big fan of prednisone :-\ I've suffered a severe flare up last night and this morning...it seems to be better this afternoon, but even last month's bloodwork shows a high RA factor. . Anyway, he asked me about going on an experimental drug program for a TNF drug like Remicade and Humira . Don't know if I want to do this or not yet...but he's also given me papers to read on Remicade and Humira. I was wondering if anyone can tell me about their experience with Humira and Remicade?
How is it adminsitered? I'm not crazy about needles but can handle it if need be, don't know if I can do it myself tho.
What is the cost and do most insurance companies cover it? We have United Healthcare. If so about what is your monthly cost for it?
Has anyone had any severe side effects?
Does it work well for you?
I'm assuming he's going to keep me on MTX with the TNF drugs whichever I choose to try out.
Arrggggggggh, don't know what to do so I'm just going to research and I'm asking for your input.
Thanks!
--

Is anyone on here getting their Enbrel through Medicare? If so, would you
email me at ncampbell@... ?
I finally got my letter from them this afternoon and it makes no sense. I
tried to talk to the nurse at the doc's office, but the stupid girl up front
wouldn't let me. I tried calling Enbrel, but couldn't get them either.
I'm so frustrated I'm about to scream.
Nina

Hello everyone, I am on Medicare and Pima Health (what they call
Medicaid in Arizona) Without warning they cut me off my Enbrel.I went
to refill the order ,and the pharmacy said that the ins will no longer
pay for it.Now that is 3 x I have had to stop my Enbrel..It has not
even had a chance to work.In the meantime my body is being eaten up by
the alien RA.Is anyone else having probs with their insurance?.Skye

Hey there Zoom..I was on Mobic for a little while,didn't help me at
all.But then again none of the anti inflam.drugs has helped me..It may
or may not help you.Everyone is diff. I did not have any side
effects.............Skye

Anybody on Mobic here?

We need some advice. Which web sites do you recommend for reliable
information about arthritis and the drugs used to treat arthritis.
We usually go to Mayo Clinic's web site but there must be other good ones.
Thanks for your help.
Vera & Paul in hot Florida
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Hi kids...
Well - went to see my FP on Friday and he was in a hurry and
defintely had "his crabby pants on"...
He kept looking at this watch... I would ask if he had to be
somewhere & if he wanted me to come back...
I had my 22 month old very curious daughter with me and he said he
couldn't think straight with the extra commotion... I replied,
isn't your daughter going on 1 year next month and told him he
better get used to it...
He scoffed at me when I told him my neurologist was 99% sure my
troubles were RA... he actually laughed and "well, I'm 99% sure
it's Fibromyalgia"... come to find out from a friend who also sees
both docs that they weren't getting along... Guess some big golf
tourney team issue... My FP wasn't invited to play!!! I just love
being a scapegoat - don't you guys??
Then he told me that all I needed was a good night's rest and I'd
feel much better... I told him to walk around in my body for a day -
even after a good's nite sleep - and see if he changes his mind...
I won't be going back to see him... but will definitely request to
see his wonderful PA, which I should have seen in the first place...
So anyway... regarding blood tests... My neurologist had only
ordered regular type blood tests along with my RA Factor (which was
9.1) Is it true that the RA Factor test can be quite deceiving?
What tests should be done on initial visit to Rheumy? What
questions should be asked?
So my good friend, Dr. FP, said to take 800 mg of Ibuprophen every 8
hours, which I had been doing... He also suggested 1000 mg of Fish
Oil capsules twice/day and 1 Tbsp Flaxseed Oil w/ food once a
day... Any feedback or where to buy cheaply would be greatly
appreciated!!!
Thanks much for your comments & ideas!!!
Jaime

Hi Sam,
You ask how long Paul & I have been married. It was 50 years last August...
I was a child bride. LOL We were both 20 when we married and Paul was 27
when the RA hit him hard. All they could offer for relief was aspirin and
steroids. His knees used to swell and fill with fluid and the doctor would
drain the fluid off. Very painful. Now his knees don't bother him. It is
a squirrelie disease. (sp) I think he has had RA in every joint in his
body. The only place that showed any signs of deformity was his right hand
and that was because the tendons were slipping down over the knuckles. The
hand surgeon tied the tendons back in place and that straightened his
fingers. But he does not have the strength or dexterity that he would like
in that hand.
Around the age of 30 I started with Restless Legs Syndrome (RLS) and the
doctors didn't know what I was talking about for several years. Paul was
very understanding and supportive through the years with me and I try to be
the same way with him. I don't get irritated with him but I get very
annoyed with the disease and with people that don't understand that he can't
do some of the thinks they think he should do. I'm sure you all know what
I'm talking about.
We are looking forward to learning from this support group.
Vera & Paul in Florida
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My husband, who has had RA for over 40 years, used to call me from his
office and ask what we were having for dinner. Then he would tell me that
his jaw was painful and due to swelling he could not close his teeth and
needed something to eat that was soft and easy to chew. The RA seems to
have 'burned its self out' in that area and he hasn't mentioned it in a long
time.
I don't have RA but I have Osteo arthritis in my neck, hands and toes.
Occasionally one side of my jaw will be painful but I never remember to ask
the Rheumatoligist if that could be Osteo. It was so painful once that I
went to the dentist thinking I had a tooth infection. X-rays did not show
any problem.
Vera in Central Fla.
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Hi Marie,
Paul had hand surgery about ten years ago and it was very successful.
Before that he could only type with one finger, difficult to hold a cup or
anything. And the fingers have stayed straight. There are surgeons that
only do hand surgery.
Vera in Florida
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Gina and all,
Good news! The numbness in Paul's thighs has subsided! No longer painful
in
one leg but continuing to experience pain in the other leg. I can see a
big improvement in him. He is walking better and sleeping well. I don't
think he will try Remicade again.
Have a great weekend.
Vera/Central Florida
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Gina and all,
Good news! The numbness in Paul's thigh has subsided! No longer painful in
that leg but continuing to experience pain in the other leg. I can see a
big improvement in him. He is walking better and sleeping well. I don't
think he will try Remicade again.
Have a great weekend.
Vera/Central Florida
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I was just diagnosed, though this was not a shock. My mother has RA
and was diagnosed in her 40s. I am 40 married for 20+ yrs and have 6
children. I have had hand feet and hip pain for several years. but
did not want to admit it. hips are worst. it go to the point where I
could not go up and down stairs in the morning without much pain.
Although the diagnosis was not a shock I am still very down. It's not
the pain I am most upset about, my mothers hands and feet are so mis-
shapen that It hurts to look at them. I really don't want to get
like that.
Marie

My husband has had RA since he was 27 and is now 71. His medications
stopped working so his Rheumatoligist suggested Remicade. After the first
infusion of Remicade he began having pain in his lower back then both legs
and the front of both thighs have become numb. He's been x-rayed and back
problems are ruled out. So the thinking is his problem is a side effect of
the Remicade. Any problems such as he's having are listed as possible side
effects.
Have any of you experienced such side effects after you were given
Remicade??
Thank you,
Vera/Central Florida
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Hello everyone,

This is in response to recent posts.

I'm Steph in VA. I'm 27 and have been living with inflammatory arthritis for 5.5 years, since 1999. I was dx'd in my last semester in college. Like many here, I have been on lots of meds. My current regimen is: Azulfidine EN, Ibuprofen, Folic Acid, Methotrexate, Prednisone, Flexerall and Remicade. I am also currently on 1500mg of Vicodin every 4 hours since my car accident on Tuesday. I have also tried: Naproxyn, Celebrex, Vioxx and Enbrel.

Sunshine: Welcome to the group. It is very common to have RA plus other health problems. It is unfortunate that your liver problems prohibit you from taking the normal meds. My doc has also told me I'm an interesting statistic. In addition to having arthritis, I also have a bi-fold uvala in my throat, which prevents me from taking certain meds depending on their shape.

I have been on Prednisone since I was dx'd. At my peak I was on 80 mg/day and I am currently on 3.5 mg/day. Prior to arthritis I was a dancer and was a size 4. On prednisone I ballooned to a size 18. I am currently in between a size 14 and a size 12. My best friend is getting married at the end of July and my dress is a size 12.

My meds are also very effective but I also still have pain every day. This last month has been rough for me too, with the constant increase in barometric pressure without the release of rain and rain continuously for days.

Regarding dating with arthritis, I dated a man for 3 years who also had arthritis. I thought he would understand my limitations. For many reasons, it didn't work out. I'm now engaged to a man who appreciates my abilities and limitations. He has my thirst for knowledge. He loves to join me on my rheumy visits so he can ask questions. On Sunday mornings he actually likes to fill my pill container for the week and he tests his knowledge of the drugs with their names, benefits and side effects. We have been dating for 6 months and he has been educating his family on some of the myths about living with arthritis and encourages them to ask questions.

Jenni: I was not offended by your cow comment. I don't know how long you have had arthritis & been on prednisone. I had to take 6 months off between finishing college and working, which is when my ballooning weight from Pred peaked. I know I was also dealing with depression to my situation at the time and had a tendency to lash out at others and call myself fat. Even though I am now on 3.5 mg/day and am only 15 pounds from my original weight, I had the occasional lapse of self pity.

While we are vulnerable to the occasional lashing out, I would appreciate you toning down your responses. All of us have enough stress in our lives without being distracted by a controversary in a support group. I am not plotting for your removal from the list, but I cannot speak for others.

While you listed things you believe do not work, it is insensitive to call them stupid. All of us have different things that work for us. Frankly, I would dance naked on CNN if I thought it would work.

It is not necessary for you to list your faith and/or sexual orientation. As we know, arthritis does not discriminate and pointing out these aspects of your life, while important to you, may cause this list to turn political and that is something we could do without.

I agree that life is short. That said, it is unnecessary to be indifferent to people's feelings.

I don't know how old you are but I'm 27 and have had arthritis for almost 6 years. We are here to support each other, not bring others down.

Nichole: The bumps you have referred to are rheumatoid nodules, a common symptom of arthritis they are bundles of inflammation that typical appear in joints that have arthritis. They are typically red and warm to the touch. They usually decrease in size with the help of meds.

Take care,

Steph in va :)

Hi! Nice to read the daily digest... Am newly diagnosed with
questions and a need to vent...
Just wondering how many of you are on Disability and if so, how long
did it take to receive any type of financial relief... I've been
unable to work for over a year now... don't really know what I could
do... hands are useless... can't write or type as my hands go
numb, tingly and hurt... can't sit for long periods of time... it's
hard to walk most of the time with pain in either my hips, knees,
ankles &/or feet... blah blah blah - you all know how I'm feeling...
I also am recently seperated and am caring for our 22 month old
daughter, aka "Turbo" lol. (Thank God she's a good kid... not sure
what I'd do if she wasn't) It is very stressful to have to rely on
husband solely for financial support. At this time he is paying all
the bills and growing very tired of doing so. He's trying to get me
to move home and I may have no choice if he decides to stop paying
the rent, car payment, utilities, etc.
Moving back would only make matters worse as he is a huge slob and I
can barely take care of my rented little house, our daughter and
myself.... let alone a 2600 sq ft house on a 1.1 acre landscaped
lot. My home must be clean as I live by the theory of "cluttered
home, cluttered mind". Since I left him in April, my blood pressure
is back to normal, I'm off xanax, and resting through the night for
the first time in a very long time.
I've been battling fatigue, joint pain & muscle aches since my first
back surgery in 1996. Was just diagnosed with RA, but have no
details yet. Am seeing Rheumatologist for 1st time on July 6th.
The RA was diagnosed after finding my cervical disc C4-5 full on
bone spurs. Awaiting 2nd surgery consult to see if they can
successfully remove them - but they are doubtful. I am also very
prone to adhesions so they are positive there is plenty of scar
tissue in there too. After 2 back surgeries to remove disc L5, they
believe there is scar tissue in that area and that the fusion did
not hold. I have lost 50lbs, so my lower back feels better at
least. But the weight loss did not relief any hip pain.
Any advice, suggestions, or support would be greatly appreciated.
Please feel free to email me directly or to the group... better go
for now as hands are shot and my daughter is finally getting up!
Thanks to all and my God Bless You Always
Jaime

For your enjoyment and entertainment, I present the minutes of my morning. As background, I should note that I'm alone in the house for the weekend -- my family's several hundred miles away at a lacrosse tournament until Sunday evening, and I'm sharing space with one large fluffy black dog, two hamsters, and a 6 month old Yorkshire terrier who is not housetrained yet. The reason I slept in my sister's room is that the two dogs often help themselves to my bed space (while I am still occupying it) and my own mattress is a twin size, whereas Katie's is a full.

Be glad this is not your life.

5am is traditionally not my best time of the day. I either haven't gone to sleep yet or I've just gotten up, and neither one really leaves me with IQ points intact. This morning it was the latter. I slept in Katie's room last night and her alarm clock shrilled bright and early, so I rolled out of bed and took Sky out to use the grass while I was awake anyway. After 15 minutes of early morning air I couldn't get back to sleep so I trudged into the kitchen and eyed my shiny cappucino machine. I don't use it often because it's a pain in the ass and I am lazy. Somehow my 5:15 judgement was clouded enough to lose sight of both those very important facts.
Note to self: PLAN AHEAD. If you buy pre-ground coffee to avoid needing to pour beans and operate the blade grinder at times of the morning when you are not at your best, it's a good idea to check the cannister in advance and ensure there is not an actual metal lid requiring use of the can opener, as opposed to one of those foil pull-top seals you were expecting. This is not Folger's Crystals -- no, because you were already iffy about sacrificing the qualify of fresh beans for pre-ground, you absolutely had to buy the gourmet Italian stuff, and for that amount of money the coffee people are a little more serious about keeping their product fresh. If there is such a lid, remove it ahead of time. That is why the cannister comes with an air-tight rubber cap. Let's face it, if you're too fucked up to be able to figure out which end of the can opener is up, you're not going to notice if your coffee is 8 hours old and revived in the microwave, let alone if the cannister
is freshly opened.
Successfully having negotiated the can opener, I was then required to dig around in three cabinets and one glued-shut drawer looking for the little metal cannister filter that fits into the espresso head. The gods forbid I own a piece of kitchen equipment that doesn't come with fifty little detachable pieces. I somehow managed to measure grounds into the filter, insert the filter, lock down the filter, measure water into the airtight tank, and seal the airtight tank. I'm sure my measurements were less than accurate considering by this point I no longer cared about the use of any form of measuring device, but the day I can't pour out coffee beans by sight is the day I'm buried.
I then promptly went off to perform my morning ablutions, completely forgetting the fact that the steamer attachment for milk requires one to wait until enough pressure has built up in the tank to begin the espresso process, temporarily halt said process, then steam the milk utilizing the available steam in the tank before restarting the process to complete the espresso. Now you should begin to realize how idiotic it was to even attempt this within an hour (to either side) of dawn. By the time I felt suitably clean and refreshed, the espresso had completed and there was no more steam in the tank for the milk. This required me to unseal the tank, a touchy and hot process requiring use of a dish towel (you're really not supposed to do it until the machine's had a little time to cool down), refill it with fresh water, reseal it, and turn the whole thing back on to wait for pressure to build. Another laborious and agonizingly slow noncaffeinated five minutes.
Then the steamer didn't work.
I flipped the switch, held the pitcher under the nozzle, and waited. Nothing. The nozzle wasn't even heating. I'll spare the florid description of my slow-witted attempts to discover the problem, which ate up ten more minutes and turned out to be that I apparently couldn't be bothered to clean the nozzle the last time I used the machine (probably months ago) and it was clogged. Note: when the manual says to insert a fine-tipped needle gently into the tip of the nozzle to ensure any hardened milk is cleared out what they really mean is to jam something about the width of a fork tine up several inches into the nozzle and then very quickly remove your hands, or have them wrapped in a dish towel, as the resulting escape of built-up steam pressure will be very loud, very hot, and very painful. The fine-tipped needle concept didn't work -- I gently inserted it and assumed all was well, but the steamer still failed to function, and that threw me for a loop for a while until
it occured to me to try something a bit less fine-tipped. I shouldn't have to tell you that I learned that bit of advice about the dish towel the hard way. In the end I successfully managed to steam the appropriate amount of frothy dairy product after several miscalculations as to how much the appropriate amount was.
So now it's been about twenty minutes. My espresso itself is probably growing cold. The countertop is strewn with coffee grinds, used spoons, opened cans, spilled cold half & half, spilled steamed half & half, spilled espresso, spilled cold water, spilled incredibly hot water, soggy dish towels, and half-melted plastic coffee cups. My right hand is turning red and there's the beginnings of a blister on my left ring finger. Now is when I discover that my mother, reasoning that I am the shortest person in the house and also the only person who takes sugar in my coffee, has cleverly decided that an appropriate place to store the sugar bowl is in the china cabinet top shelf approximately two feet over my head. I should mention that this is not the first time she's placed it there, nor is it the only or even the most convenient place to store a glass container of its size. Either it's some kind of passive aggressive wrath or she's really, really averse to the idea of
sweetened coffee. (Okay, okay, I'll stop being mean and say that I assume the actual reason is that she's 5'9" and often in her hurry to clear off the countertop that I've left a huge mess on, it slips her mind that I'm nine inches shorter and have difficulty reaching and bending. That being said, it's still incredibly frustrating that she repeatedly places the only countertop item which is solely for my use into the only storage space I'm not able to practically access. Why can't the coffee spoons or the cream pitcher or the saucers or anything else nonessential go up there?). Finally in frustration I dragged out the 5lb bag of sugar from the pantry, managing to add a crystalline sparkle of white powder to the rapidly congealing slurry on the countertop.
About 40 minutes have passed. I've destroyed the kitchen, given myself first degree burns, and abused my shoulder, elbow, wrist, and finger joints to the point where I'm either going to have to take a painkiller or accept that I will not be able to type, open doors, dress myself, or pick anything up for the next six hours.
However it must be said that I have produced the most fabulous cup of cappucino known to man. I spooned on some real whipped cream that I'd made for the strawberries last night.

Hello everyone...
This is my second post, thanks for all of the feedback on Humira and getting
discouraged. I
don't think I am quite ready to try the gin raisins yet... However, I just went
down one more
mg on my prednisone and have stopped the Enbrel in anticipation of beginning the
Humira...
OUCH!!! I see my family physician on Monday, and am wondering if it is
appropriate to ask
for a prescription for Vicodin? I tried some tylenol with codiene the other
night and it really
didn't help. I took Vicodin in the past after various surgeries and it really
worked for me. I
only seem to have uncontrollable pain in the late afternoon and into the
evening.
Theoretically the pain should subside once I adjust to the new prednisone levels
and/or the
Humira kicks in right????
I guess I am nervous about sounding like a "desperate housewife/stay at home mom
on
pills"... Any opinions?
You guys are really an awesome group, thanks for the support!
Sam

Hi everyone,
This is Steph in VA. First, in response to John's post ... I have gotten my Remicade 3 ways -- at my rheumy's office, at the medical outpatient section of the hospital and at home. I enjoy getting it at home the most b/c I'm more comfortable and the time is more flexible. As a bonus, my insurance covers the home health visits 100%. I used to pay $100 for each hospital visit (standard outpatient co-pay) and $20 at the doctor's office (specialist co-pay).

In the way of news, I was in a terrible car accident on Tuesday evening. My car flipped over and hit an embankment. It totalled my car but I, very fortunately, walked away with some cuts and bruises. In addition to my normal meds I'm on 1500mg of Vicodin every 4 hours. I'm thankful it hasn't sent me into a flare. Please keep me in your thoughts if it isn't too much to ask for. I need all the prayers I can get!

Take care,

Steph in VA

I had a girlfriend who gave me a recipe for golden raisins soaked in
either gin or rum - you eat 8 a day and she says her grandmother swears
by it and also a man in her office. Has anyone heard of this or tried
it? Were you on your normal R.A. meds as well or not on any meds?
I've never tried it but still have the recipe. Like usual, I tend to
ask my doc first before trying something that others think are the
miracle cures. She just laughed and said she had seen it and they
hung it on their bulletin board at work for a joke.

I'm finding it very interesting reading all the messages. It makes me
feel more human and that there are people out there that understand! I
was diagnosed with R.A. 2 1/2 yrs ago. On top of that I was also
daignosed with diabetes and liver disease. The liver disease is now
under control but I can't take the normal meds because they can cause
liver problems.
So I'm the experiment as one doc told me. I'm currently on Humiri and
Imuran, taking ibuprofen during the day, and pain meds at night if
needed. Prednisone is not good as it makes your blood sugar rise but I
have taken it and it does make the pain go away, but I can't take it
for long or I'll end up messing up my other organs. It is also bad for
bone mass and does make you gain weight, usually your face will pumpkin
out.
I still have pain somewhere every day, just some days are better than
others. I've learned to live with it most days. Without the meds, I'd
probably be disabled, as 2 years ago, I could barely walk, dress, or
start my car, let alone walk to work without tears.
This last month has been rough, not sure it is the change in weather
patterns or medicine changes since I just switched from Enbrel to
Humira 2 months ago, but my wrists feel like someone took a sledge
hammer to both of them this weekend. Without your hands, you are
pretty much useless. So let's just say I was in bed almost all
weekend, worrying if I'd be able to make it into work or not today.
But I made it! And I feel much better, thank God! As I had lost one
day last week.
I'm glad to hear others stories and wish all the best with this
terrible disease. I hope someday they find a cure or some better meds
that aren't so expensive and can keep us working and healthy!
So Jenni - eat some chocolate for me okay and take care! I'm so sorry
for all your pain. I feel for the children who have this terrible
disease and only glad it happened to me at this age rather than
earlier. How long have you had it?
You have just told me my worse fear, that I might have to be dependent
on family or someone else in the future, which scares me a lot as I've
always been independent and don't have anyone to take me in, my parents
have their own health issues. I have already been told by a few men
that they can't handle my health issues. But they ask me out, as I
look just fine, but when I tell them about my RA and diabetes, I'm
history.
That's my life.

Hey Susan ,

Was just looking at your epson salt post and it brought to mind about me working with lots of toxic chemicals , what is a good way to cleanse the internal body , if you dont mind me asking ? I think this question is more along your expertise if im not mistaken .

thanks John

I have been in so much pain this last few days the Dr. called me in a
Rx for Celebrex. I took my first pill today and within 4 hours I am
misserable. I am itching all over from head to toe. No rash or
anything. And I got this cold sore that just like showed up and is
huge within 4 hours. Could I be allergic or am I just over reacting? I
was just diagnosed with RA and am waithing to see a Rheumy.
Nichol

well Monday morning I awoke to terrible hip pain. I suffered through Monday figuring this was yet another case of bad bursitis. I have had bursitis before in the past in my hips and elbow.

The time I had it in my elbow it was so bad that the bursa popped out from under the muscle like a goose egg. Normally I get a shot of steroids into the area and it goes away as does the pain.

Well my PCP today sent me for Xrays of the hip. He compared them to my past Xrays from the past 3 yrs and it showed significant arthritic changes in the socket.....plus he believes I had a bone spur that has broken off and is floating around in the joint.

He said that the ball looks good and does not see much change from my old Xrays.

He wanted the ortho doc to see me immediately and put a shot into the hip which would give me some relief in the pain. But the doc was too busy and would not see me. So they scheduled me for an appnt with ortho the end of this month. In the meantime I took the offer of Lodine XL and nexium. It was this or leave with no relief and nothing! I just hope and pray this stuff will not tear up my stomach or cause ulcers. As my poor little pouch is quite sensitive to meds.

I called my new rheummy and he can not see me until July. So I guess I just sit and wait and see what happens. So for now I am in a holding pattern until I see the rheummy. My internal med doc does not want me to start any of the RA meds that my old rheummy ordered until I see this new doc.

My Internist did do a ANA which showed one elevated value of a weak positive ANA and the pattern was homogeneous speckled pattern. My internists say this is negative test...but I guess we see what the rheummy says.

Well, I am off to bed...hip is sore as heck and hurts like heck.

Toni

OkAY okAY. Third one from me in less than an hour. It has been brought discreetly to my attention that when I said "glad I'm not a cow" some of you may have been offended and thought I was implying that you (collectively) are cows. That isn't what I meant and really, if you were upset you need to unwad your panties or your boxer shorts. I don't think anyone was. I can be rude sometimes but I don't ever intend to make someone feel bad.

For those of you who are new, I will introduce myself.

The people who have been on this list for awhile know me and have gotten used to me. That or everyone secretly is planning to report me to the moderator in a big clump and get me kicked off, but I'll handle that when it happens. I'm lots of things people hate. I think antibiotic therapy and "NO" diets and Swiss tofu sprouts are stupid ideas that don't work. I think narcotic painkillers are okay and don't mean you're a weak-willed addict with a problem. I'm a short pagan lesbian with red hair and more opinions than is really healthy, and while I swear I do have tact, I often choose not to use it. But I do use swear words sometimes. Sorry. Life's short and there's no time to waste worrying about whether I called someone a cow. I'm sure no one here is overly bovine. And if you are, so what? I'm a crip who lives with my parents because I have no job and mooch off the government disability, and sometimes if there's a low pressure front coming in or I slept wrong, I
can't dress myself and my mommy has to wipe my ass. Now aren't you glad to be a cow instead of that? Moooooooo. Go eat yourself a Hershey bar and enjoy it and smile, because you probably spent today wanting to scream every time you stood up or moved a joint, and nobody should have to put up with that AND a lack of Hershey bars in the same day.

So I apologize if I offend anyone -- today or on other days. I think I may be the youngest person here but I've also had this crap disease for longer than most of you. I'm always happy to talk to anyone who wants to hear from me about my experiences, and I promise not to swear too much if you are delicate. My AIM is ChaosPearl.

Jenni

G'Day one and all.Welcome all of you who just got on board.In
regards to the one who is discouraged, it happens to all..but some
things you just need to ride out.Unless you feel like the meds are
poisoning you.I have gotten off a couple of meds that I felt were
making matters worse.Currently I am on Enbrel and
methatrexate.Again..welcome.......Skye

Hi everyone...
I found your group while doing some web research this evening. I am
37 and coping with RA... I was first diagnosed in 1987. It went away
for 13 years and then
came back and kicked me in the butt after my last baby was born. It's
been two years and I
am getting discouraged. I have three little guys under 6 and it's a
challenge to be a mom
sometimes. It affects my knees, hands and most recently my feet and
ankles... frankly it
justplain stinks!! So far I have been on prednisone, methotrexate and
Enbrel. Since the Enbrel
is not working I am transitioning on to Humira in the next few weeks.
Has anyone else
hadany experience in going from Enbrel to Humira? They seem pretty
similiar and I amunsure
as to why my rheum. thinks Humira will work where Enbrel has not. I
am also weaning off of
the prednisone having been on it for over a year... my weight has
ballooned and it is very
stubbornly staying put! Anyone have any great predinsone diet
tricks!?!?!
I guess I am just looking for some understanding and support as I am
the only one in my
family who has RA and sometimes it seems as though no one else gets
it. Some days it feels
like if we all ignore it won't really be there and it's getting
harder for me to ignore!
Thanks for any words of wisdom you can pass along.
Sam

Hello all, My name is Tracy and I'm new to this group. I've not been
diagnosed with RA but am pretty sure that I will be. My mother was
diagnosed about ten years ago. I have been suffering from some
problems that resulted from gastric bypass surgery in August. I was
unable to eat for about 4 months and developed peripheral neuropathy
due to malnutrition. I have numbness, tingling and burning pain from
the bottom lip down. But, along with these symptoms my joints feel
enflamed and swollen. They are extremely tender to the touch
and "sore". This is especially true for the joints in my feet. They
are so sore and tender that some days I can barely stand it. My knees
feel as if I look down on them they will be about 3 times bigger than
normal. I've been over the latter symptoms I mentioned with my
neurologist many times and he assures me they are not a result of the
peripheral neuropathy. However, he has not suggested a test for RA. Do
those latter symptoms sound as if they might be RA? I
Thank You,
Tracy

Hi my name is Nichol and i'm 33 years old, Married and have three
wonderful Children. I have been very sick the past year. And after a
huge batch of test they diagnosed me with
RA. It started last year I ran a fever for 4 weeks of
about 99 - 103 degrees. I couldn't even get out of bed I was so
stiff and sore. I ached all over and just felt like I sould die at
any
moment. I then started getting these bumps all over my legs. They
ended up telling me it was called erythema nodosum. These bumps were
on my legs from the knee on down, for about 6 weeks and I couldn't
even walk very well. My
ankles were red and tender and about twice the size they regularly
are. I got well and was doing ok until about 6 weeks ago. Then I
started running the fever again but no bumps. I felt like I had been
ran over with a mac truck. I had the fever for 2 1/2 weeks this
time.
I went to the dr. and they ran all kinds of tests. I am also very
very anemic.
So they did more tests and came to the conclution that I have RA. I
have to see a rheumetologist but I can't get in to see one until
July.
So here is my questions. Are these bumps I had related to the RA?
My
joints arn't hurting that much anymore but my muscels are killing me
when ever
I
do anything. From walking to typing on the computer. Is this normal?
I
have always ached here and there but when I get these fever
episodes.
I feel like my life is falling apart. I feel like a Hypocondriact?
But, I really feel awful. The only joints that really bottered me,
is I have these really swollen joints in my thumbs right at the
bottom where my hand connects to my thumb. And it feels like all the
tendens are huge and sore. If I bump them I know they are there and
they still hurt but, never got red. They
are on both thumbs. My feet also hurt really bad but not the whole
foot just one section on the outer joints in the foot. (The small
ones) but, I think it is funny because they are on both feet the
same
place. Both thumbs the same place. My knees are just really stiff
adn I also just have generalized body
aches. It takes me like 2 hours to get going in the morning. How
long
will this last? Last summer I was out for like 12 weeks please don't
tell me it is going to be a repeat!! Please help me with any
information to read. Links that help you ext. Thanks so much
Nichol

I hope you are all having a good day.
Strange coincidences have been occuring in my research and
communications on the subject of auto-immune diseases. I have two
close friends who were bitten by ticks in Southern Africa and one
developed scleroderma and the other fibromylagia (sp).They are both
on an antibiotic protocol treatment which is also prescribed for some
RAers. I wonder if we are all connected by a mycoplasma infection
which makes some of us reactive arthritis sufferers. Just a thought.
There is also trials underway for RA using goat's serum; aimspro,
which is also being used on scleroderma patients.
What do you think about the possible mycoplasma cause of RA and have
any of you heard of the aimsporo approach? Please let me know your
views
Take care.
Ken.

Hello,
My name is Dennis. I am 32 years old and live in Atlanta GA. I was
diagnosed with RA in August of 2003. As probally many of you I take a
large assortment of meds from enbrel to ambien. I look forward to
being part of the group.
Thanks,
Dennis

Good Morning,
I've had RA for 7 years now. I think I originally got it from a reaction to
a rubella vaccine. I've done pretty well on it. My medications are
plaquenil and arthrotec 75.
A couple months ago I went for blood tests. One was a new
one......cardiolipin IgM. My levels were higher than normal. My doctor
said this is indicative of a higher than normal chance of developing blood
clots. I'm supposed to take a baby aspirin daily, make sure I move lots on
long flights, take a specific drug prior to surgery....I think that's it.
Anyone else have any experience with this? It's evidently related to RA and
other autoimmune diseases.
Thanks for any info.
Leslie